A story about Hope, Justice and Compassion: A parent’s experience in the health system

By Rachel Callander

Rachel Callander

Foreword by Shahina Braganza

Many cities in Australia (including the Gold Coast where I live and work) have signed up with https://charterforcompassion.org/ over the past year. There is no doubt that paying attention to Compassion in Healthcare enhances the experience not only for patients and their carers, but for healthcare staff. Indeed studies demonstrate that compassion (as opposed to empathy) is protective against burnout [Ref: Singer, T. & Klimecki, O.M. (2014). Empathy and Compassion. Current Biology, 24, 875-878.]

In this blog piece, Rachel Callander generously writes about her experience as a parent in the healthcare system. She shares what she discovered about how language – and the words used by a doctor caring for her baby daughter – transformed her perspective that her family and their values were heard, and were allowed to inform and influence the decisions that were made about her daughter’s care.

Her piece behoves us as clinicians to ensure that while we communicate facts and information to our patients and their families, that we also clearly communicate our human connection with their story during their episode of care.

A story about Hope, Justice and Compassion: A parent’s experience in the health system.

It’s Father’s Day 2008 – a Sunday.

Exactly four months prior, my daughter Evie was born.

I’m still reeling from that experience, I’m feeling out of control, there’s so much uncertainty and fear.

Evie was born with a very rare chromosomal condition and I’m still trying to wrap my head and heart around the new shape of my reality as a parent – so different from the one I was expecting.

I feel powerless, afraid; I have so many unanswerable questions. I have spent a lot of time in the hospital with Evie over the last 4 months. I’ve seen so many different specialists. It feels like I’m constantly looking for an anchor, something to ground me. It’s like I’m learning a foreign language and I’m desperately trying to keep up.

So, on Father’s Day, I find myself walking into the Intensive Care Unit of Dunedin Hospital New Zealand.

It smells metallic and crisp, like clean sheets. It’s very bright and there are flashing machines and white beds.

Then I see her. A tiny fuzzy black head on a bed far too large. Her smallness is magnified on this bed.

She’s intubated and in an induced coma.

A few hours ago at home, she vomited, aspirated and didn’t recover well.

Our midwife told us when she was born that if something like this happened, then we should not wait for an ambulance, but get in the car and get to hospital as quickly as possible.

I’m not sure what was more frightening during that seven-minute drive. Evie’s lips turning blue before my eyes, or my husband’s driving! Next time, I thought, we are definitely taking the ambulance!

The doctors in the ICU tell us that Evie’s airways have been damaged during the intubation procedure. They’re not confident they have the tools to help her further. So she’s being prepared for a retrieval flight to Starship Hospital in Auckland.

The flight time from Dunedin to Auckland usually takes an hour and forty five minutes. This trip is closer to four hours. We fly low and slow. It’s loud and cold and dark. I can’t even talk.

Our precious cargo has earmuffs on and is inside a protective Perspex box- I shudder as I think about the kind of box we may be bringing Evie home in.

When we get to Ronald McDonald House, I buy a little plant – to help keep me grounded – something to remind me of life and beauty.

The Chief of Surgery comes to see us. She tells us that we have some big decisions to make. I feel nauseous. I brace myself for a cold, distant analysis and big words I don’t understand.

We meet her in her office.

“I need to talk to you about a tracheostomy for Evie.”

She then tells us everything involved. The surgery procedure itself, the recovery and life afterwards. We discuss Evie’s quality of life, and everything else that needs to be talked about.

She makes me feel like no question is too small or stupid. I have so often felt small and stupid when talking with health professionals, like I’m not fast enough. I’m always trying to keep up, but never quite do.

She asks if I have understood everything she has said, or if she needs to go over anything again, or in a different way.

I tell her, “I’ve understood”- and I mean it.

Then she says eleven words….

“Just because we can do these things, doesn’t mean we should”.

She follows up with five more words…

“Whatever you choose isn’t wrong”. She tells us that we are doing everything for Evie, whatever we decide.

With these words, it’s like the chasm between doctor and patient has disappeared. I felt so seen, so respected, so empowered by these words, by her compassion and her humanity.

These words, to me, were transformative.

They gave me strength to do my best for Evie, and to think of our values, because they were important. This surgeon made sure our values were heard.

This incredible woman couldn’t change or predict the outcome for Evie, but she changed how I responded to and experienced this information and decision.

We chose not to go ahead with the tracheostomy, knowing that Evie might not survive the extubating procedure without one.

I never felt small or stupid again, when talking with health professionals – and I took my new plant and Evie home with me, both alive.